Lost in transition

I recently attended the BPS joint CPD event between the Faculties of Intellectual Disabilities and for Children and Young People entitled Making the Transition. The focus was on what happens when young people with intellectual disabilities reach the transition cliff from child and young people’s services to adult services, usually at the age of eighteen. This event was especially pertinent for me, as I worked in a service for people with intellectual disabilities that transitioned from seeing people of all ages to an adults-only service when I was a trainee, which involved actually handing clients over to the new provider.

Eric Emerson launched the day with a stark statistic: four-fifths of young people transition to no services at the age of eighteen. Whilst this might be seen as heartening if they no longer need support from services, evidence suggests that they are likely to still need support. According to Emerson, people with mild to moderate intellectual disabilities are over-represented in this group, whilst being more likely to have engaged in risky health behaviours. This process seems to be mirrored in the configuration of services for adults with intellectual disabilities, which tend to be moving towards limiting access to people with mild to moderate intellectual disabilities, in the hope that they can use mainstream services.

Emerson recommended that interventions to tackle the issue of people being lost at transition age should look at addressing the adversities people face, and on building resilience. He said that the priority should be on building resilience, which can be affected by people’s personal capabilities, such as their intelligence level, their sense of hope and their spiritualities. It could also be affected by the caring people around them in their families and professional networks, as well as resources such as schools, local authority services, social capital and wealth. Psychological support can maximise people’s abilities to reach their potential in these areas. Families with relatively low socio-economic status were more likely to be repeatedly exposed to the damaging effects of poverty, and all people with intellectual disabilities tend to experience poorer health outcomes which are often potentially avoidable. Emerson felt addressing adversity was beyond the scope of psychology, although community psychologists such as Psychologists Against Austerity might disagree.

Jill McGarry and Dave Williams talked to the session about the approach they have implemented in Salford to give person-centred service planning. An interesting facet of their ethos was to “not be too distracted by newly introduced policy”, as all policies tend to stress similar goals, and over-adherence to specific policies can lead to deviation from overall service vision. Their main priority was to bring people back to Salford. They stressed several factors in achieving this, founded on a pro-active approach. Forging strong partnerships with local service providers and local authorities was key, and sometimes this could apparently lead to potentially blurred boundaries between professionals. The need for clarity around roles was therefore stressed. A helpful practical aspect of this was all staff working together in a large open-plan office, which facilitated discussion and sharing of ideas. Pooled budgets were coordinated with teams to make sure people were able to use the best possible care packages, and access to mainstream services was promoted, where appropriate. Attending monthly meetings with the eight local authorities was also prioritised. Members of the team also provide training to local service providers.

The Salford approach to building and maintaining community services has had striking results: physical restraint has been abolished for all but two clients in the area. This was attributed to the shift towards pro-active and not re-active interventions: the trigger for their challenging behaviour pathway is a change in behaviour, and not someone being in a crisis as is often the case in services. Positive Behavioural Support is used universally, which has apparently made a huge difference once implementation was complete. Services are also made aware that consultation is available prior to a referral at any time, potentially reducing eventual referrals. This openness to consultation facilitates communication between agencies and would therefore hopefully also help to cut the chance of people being lost at the stage of transition from child to adult services.

Clients from Safety Net Youth, a Hammersmith and Fulham service for young people transitioning to adult services, generously gave their time to tell us about their experiences of using the service and their hopes for the future. It was great to hear their perspectives.

Moving forwards, suggestions for potential ways to improve people’s experiences as they transition from services for children and young people to adults services included clinicians having split posts, so they were embedded in both child and adult services, which seems to make a lot of sense: they would span the gap between services. The possibility of trainees also having placements in adult and child services for people with intellectual disabilities was also mooted. I had a more radical idea too, albeit one which might be hard to implement: how about services linked to generations rather than age groups? In this structure, teams would be assigned to people based on their generation, and then travel with them throughout their lives. This would mean that clients would not have a health service transition, even if they did with other services, allowing for continuity of care and for valuable information about clients to be held within the team throughout their lives. If this is unrealistic, perhaps we need to consider other ways that we can support continuity for people, especially at a life stage that is challenging for everyone.